[Note: This criticism of the Scottish Good Practice Statement (SGPS) regarding clinical management of CFS, can be read in full text here. Psychiatrists Wessely and Smith, proponents of GET and CBT as "proven treatments" for CFS, claim the SGPS is not evidence-based, so encourages poor practice and may “confuse both patients and clinicians” with “unsustainable conclusions.” Among the reasons they give for their criticism: The SGPS reflects the “dangerous” Canadian Consensus Criteria for diagnosis. Also the SGPS suggests that graded exercise therapy’s benefit is “controversial” & suggests weight must be given to patients’ experiences; and it suggests that cognitive behavioral therapy should be used as it is “in other chronic physical medical conditions” as a tool for coping better with symptoms, especially "when their symptoms have led to a psychological response that has compounded their symptoms.”]

Abstract:
Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease.

In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesized, and appear mutually contradictory.

In this commentary, an example of where this might be the case has been analyzed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

It appears from reflection and analysis of this document that this process may indeed have gone awry.

We propose that, if followed:

• This document would lead to the adoption of dangerous diagnostic criteria for ME/CFS,

• As well as preventing patients from making informed decisions about treatment options,

• And discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.

This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.

After a quick glance of the Scottish Good Practice Statement, it appears to be a fairly balanced and basic criteria for the diagnosis and some of the current treatment options for CFS/ME. It seems humorous when the proponents of graded exercise therapy (GET) and Cognitive Behavioral Therapy make accusations that another CFS/ME criteria is dangerous. CFS/ME patients may and often do benefit from slow and gentle non-goal oriented exercise. However, it seems to me that GET can be dangerous for many CFS/ME patients. In CFS/ME the body is in a state of accelerated oxidative stress. Goal oriented exercise compounds the oxidative stress by creating oxygen reactive species the body cannot cope with in this illness.

The Scottish Good Practice Statement is being objective when it calls GET controversial. To deny that is to deny the input of thousands of patients.

As a Scottish man who has a family member with ME/CFS, I wish to respond to Mr. Wessely’s paper, ‘Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development’ published in February 2014 which unfairly criticised the Scottish authorities, ScotPHN and it’s Health Care Needs Assessment Group and their criteria for ME/CFS. I wish to refute Mr. Wessely’s argument and paper in a logical, rational and measured manner. I have drawn on evidence and facts to support my case. The Scottish health authorities have made their decision and I and many others support it on scientific and medical grounds, while repudiating the presumptions and assumptions of some psychiatrists who have shown a strong disregard for scientific evidence and facts in the past. And further representations of support, including this letter, will be given to the ScotPHN and other Scottish parliamentary bodies and medical bodies. The English and Welsh health authorities and doctor and patient organisations are welcome to copy our example in this.

Resolving of issues raised in Mr. Wessely’s paper

“it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.”

“What happens when, at first sight, the results of a considerable quantity of what we now call evidence-based medicine firmly point in one direction, while the narrative and individual accounts, at least those that are readily available, perhaps even more vehemently say the opposite. How and why can this happen, and does it matter?”

Mr. Wessely’s career has been built on subjective assessments and on assumptions and presumptions about ME/CFS, which by their very nature are subjective. He has no lab tests or objective evidence to support his own case. In fact, and quite ironically, he strongly discourages lab tests and objective evidence. His obsession with preventing the diagnosis / identification of objective evidence via lab tests and other biological based tests in ME/CFS and Fibromyalgia is his most serious defect and flaw, in a medical and scientific sense. The NICE clinics’ refusal to do necessary lab tests and other hospital tests for this illness being the most obvious example of psychiatric interference in the NICE guidelines on ME/CFS and their operation. Depriving patients of the objective evidence means Mr. Wessely and his ilk can conveniently claim that the objective evidence does not exist / is not there, and this forces a reliance on subjective data which can be viewed and interpreted in many different ways. In most cases a psychiatrist will interpret this to suit his own agenda.

Furthermore, Wessely rejects most of the objective scientific evidence and research into ME/CFS as it contradicts his own personal subjective views and subjective data. So Mr. Wessely himself is the living embodiment of the contradiction between subjective and objective. He is in effect condemning himself in the above sentences.

“We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.”

“The criteria that the Canadian consensus group have produced have not been operationally defined or validated”
“The document itself seems to have fallen foul of the key to guideline development in that there is a lack of robust peer review”

How very convenient of Mr. Wessely to mention dangerous diagnostic criteria. His own Oxford criteria which has strong psychiatric bias and excludes biological evidence accumulated over many years of research, has proved very dangerous. Similarly, the Fukuda criteria in 1994 also omitted important biological evidence and facts, and had psychiatric bias. This was recently proven in the release of letters exchanged between Dr. Straus and Dr. Fukuda in 1994. Here is a listing of people who have died as a result of medical neglect based on the premise that ME/CFS was a psychiatric illness, “all in the head” or a “non illness” as Mr. Wessely claimed in the past - http://www.ncf-net.org/memorial.htm . Yes indeed, Mr. Wessely, it is your own criteria and the psychiatric definitions of CFS which have proved most dangerous.

As regards patients making “informed decisions”, well that depends on who is doing the informing, is it medical doctors and researchers with many years experience of the illness and of the biological and objective evidence OR is it psychiatrists with a set of presumptions and assumptions ?

Wessely’s use of the term “evidence based medicine” is intriguing and contradictory, the evidence suggests that psychiatric based treatments do not work, the failed PACE trial being one example, and that certain biological treatments which address the biological abnormalities, dysfunctions and infections found in ME/CFS do work. I would draw Mr. Wessely’s attention to some research papers which details the lack of effectiveness and safety of psychiatric based treatments in ME/CFS - www.me-ireland.com/scientific/16.htm

As for evidence based treatments, and use of the Canadian criteria in research, sadly some psychiatrists slyly and deviously worked to prevent and stop biological based government funded research into ME/CFS for many years. Many excellent biological based research proposals were rejected over the years by government bodies, on the advice of certain psychiatrists, thus depriving millions of patients of promising biological based treatments. And depriving the scientific community of “robust peer review” and “evidence based medicine”. This activity by certain psychiatrists was very shameful, but some people have no shame or sense of shame.

Despite these obstacles, there is some scientific evidence to support the assertions in the Canadian criteria, they are referenced in the document itself and on the following international web sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l

Mr. Wessely’s own Oxford criteria for CFS was drawn up by psychiatrists for psychiatrists, it lacked an adequate proper guideline development process, it lacked robust multi-disciplinary peer reviews, it replicated studies and double blind placebo controlled studies, it lacked conclusive results, it lacked statistical analysis, it lacked conclusive evidence and it conveniently omitted important biological and scientific evidence at the time. It was flawed on many levels, and was not fair and balanced. And this Oxford criteria still lacks these necessary components. Mr. Wessely would need to examine his own flaws, mistakes and errors before pointing the finger at others.

Mr. Wessely conveniently forgot to mention in his Oxford criteria and research papers that the Holmes CFS criteria of 1988 specifically excluded psychiatric illnesses from the definition and from the diagnostics. Yet Mr. Wessely and his disciples have invented all manner of psychiatric illnesses, including somatoform disorders, somatic syndromes and psychosomatic illness to describe and define CFS. He directly contradicts the findings and conclusions of the Holmes committee of the CDC which met to define CFS in 1988. Mr. Wessely seems to be behaving like a loose cannon, inventing all kind of novel stuff for his own purposes. This is not scientific or medically sound.

“a result of patient group pressure on politicians who then outsource the work to a panel the patient group select, leading to a one-sided document.”

Mr. Wessely conveniently forgets that his own Oxford criteria was a one sided document devised and approved by psychiatrists for psychiatrists, with no patient input, and this document was used to apply pressure on politicians and civil servants to view ME/CFS as a psychiatric illness and integrate this fallacy into the newly established NICE clinics.

Mr. Wessely fails to differentiate between ME and CFS, and the origins of both illnesses. There are differences, but he merges the two into one, to create an artificial psychiatric illness which tells one nothing about either illness.

“ This is the view of most neurologists: in a 2011 survey of neurologists working in the UK, 84% did not consider that ME or CFS was a neurological condition”

There are some neurological abnormalities in subgroups of ME/CFS and this has been established by scientific studies, some of which are mentioned here at international sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l . Information about ME/CFS provided to doctors and neurologists in the UK via medical books, journals, newsletters, the press and media for 20 years have stated that ME/CFS is a psychiatric or psychological illness, that it is “all in the mind” and a “non illness”. It has been the subject of ridicule and jokes in some journals and newsletters. Some psychiatrists like to joke and laugh about ME/CFS, and this in itself explains a lot. The ‘Wessely school psychiatrists’ and their Oxford criteria have played a major role in this. This explains the views of the neurologists mentioned above.

In the paper, Mr. Wessely mentions and praises the NICE and it’s criteria for ME/CFS and contrasts it with ScotPHN. The NICE criteria was developed by and for psychiatrists, it has obvious psychiatric bias, and rejects the biological aspects of ME/CFS. There was also evidence of censorship, bias in literature reviews, bias in the CFS definitions accepted, and conflicts of interest in it’s development for NICE. It was not a gold standard guideline development process, it was a purely biased psychiatric guideline development process, poor in quality and in delivery.

Mr Wessely whinges about verbal and personal attacks on psychiatrists. Yet he neglects to mention the attacks on ME/CFS patients both verbal and physical resulting from the stigma of psychiatric illness and being ridiculed, insulted and humiliated in public. People with real or alleged psychiatric illnesses are seen as vulnerable and easy targets in so called “civilised societies” in Europe and North America, and are regularly attacked. There are many cases of ME/CFS patients, including adults and children, being bullied and insulted and mocked for their illness, and several cases of aggression and violence against patients, all of it caused by the psychiatric label. Furthermore, many patients have suffered relationship difficulties and marital breakdown, separation and divorce as a result of the psychiatric stigma and the neglect of the illness resulting from psychiatric prejudices. Many people have lost careers from this medical neglect and psychiatric label. So Mr. Wessely, you and your views have inflicted considerable abuse, violence and pain on many patients

The studies Mr. Wessely quoted regarding exercise and CBT were flawed, failed to identify ME/CFS patients using strict diagnostic criteria, failed to identify severe cases of ME/CFS (those who are bed ridden and those in wheelchairs), recruited psychiatric patients using Oxford and Fukuda criteria, and the results were weak and inconclusive. There are no recoveries from exercise and CBT in ME/CFS, because the biological abnormalities, dysfunctions and infections are not being treated. Mr. Wessely conveniently omits to mention that patients have fully recovered from anti-viral and immune system treatments in some clinical studies. Furthermore, Mr. Wessely’s statements about the benefits of exercise and CBT in ME/CFS are contradicted by several studies and scientific evidence, which show that exercising seriously ill ME/CFS patients with muscular, cardiac, vascular and mitochondria abnormalities is dangerous, some research papers are listed here at an international web site www.me-ireland.com/scientific/16.htm

Mr. Wessely needs to made aware that some psychiatrists and doctors have been guilty of presuming a person to have a psychiatric illness when in fact they did not have one, but had a serious physical, biological illness. One case which comes to mind is that of a woman who had Chronic Lyme disease. The psychiatrists claimed she had a psychiatric illness and that it was “all in her head”. After going here and there to several doctors, and getting no satisfaction, she eventually found a doctor who carried out many intensive tests and diagnosed her with MS. A few years later she got some more tests and was diagnosed with Chronic Lyme disease, with neurological abnormalities. Apparently it has some similar symptoms to MS. She got treatment for Chronic Lyme disease, and her condition improved and she recovered. This was certainly a lot more effective than CBT, GET and exercise therapy as recommended by psychiatrists to her. So the psychiatrists were proven wrong. The presumptions, assumptions and subjective views of the psychiatrists were wrong, and possibly dangerous and life threatening to the woman involved. There have been many similar cases like this worldwide. This article was in the British press recently, and drew much attention from people. This case and many other cases like it worldwide certainly clarifies a lot of issues for ME patients and their doctors.

Mr Wessely cites in his paper on a few occasions that ME/CFS is a controversial illness. This a very interesting point. Mr. Wessely persistently refuses to look at and accept the objective biological evidence from scientific studies, and this is the main controversy in this illness. In this, he denies himself valuable information, thus depriving himself and his colleagues of vital facts relating to this illness. This is entirely his own decision and he has not been put under any duress or pressure from patients or doctors to arrive at this decision.

In the course of life, there will always be misperceptions and misunderstandings arising from lack of knowledge of the full facts, and indeed refusal to look at the facts. In all matters of science, health care, scientific research, sociology (including disability rights), differentiating between what's alleged, what's subjectively perceived, what’s popular, what's corrupted or manipulated in any way, what's unchallenged and more importantly what’s proved and verified, and represented is the real issue here. This was the essence of Popper's empirical falsification theory. Forensic analysis and forensic level testing is a necessary bedfellow in this affair, especially when one has to "find the truth hidden within layers and layers of lies, deceptions, half-truths, conflicts of interest, misdirections and obfuscations" and this is always challenging and divisive. The biological facts and evidence that ME and CFS are physical and biological illnesses, predominantly immunological, neurological and endocrinological are known and proven yet somehow some persons wish to ignore and/or reject the scientific facts. And in the normal course of events, this creates division and controversy.

I will be making these facts and information available to the Scottish health authorities and the health authorities in other countries. We still live in a democracy in the UK and people still have the right to question and to speak out, and to engage in scientific debate. The purpose of this letter was to refute Mr. Wessely’s paper in it’s entirety, and to provide a proper and logical examination of scientific facts, evidence, and truth. It is not to abuse anyone, though many, many patients have suffered abuse and worse over the years at the hands of those who dismiss their illness as psychiatric / psychological. I hope this clears up the situation.